Month: May 2012

From the start of our journey with Rudy, Rolf and I have attempted to be honest with the big kids and not keep important information from them that they are able to understand even if that information is bad news or scary. It has been important for all of us to face the reality of our situation head-on and, hopefully, navigate all the ups and downs as healthy as possible. I’d like to say Rolf and I have been really good at sitting down with the kids and “updating” them as needed with open discussions about how Rudy is doing and asking them how they are doing but the reality is that doesn’t happen very often. The kids are usually informed by the quick call home after a hospital procedure or the mention of a dr. appt at the dinner table or, frankly, by posts on Rudy’s Beat and the intentional dialogue usually happens one-on-one during car rides from school or to an activity. Sometimes I make an attempt to talk to the big kids about Rudy and they aren’t in the mood. So, you charge along in the fast-paced life of a family that is growing up thinking you have a good handle on how everyone is doing and what everyone is feeling and then, out of the blue, you catch a glimpse of your kids…a deeper insight into their thoughts…and you realize the impact of life’s unique experiences runs so much deeper than you hear about in those quick “check-ins” from time to time.

Sometimes it can come indirectly like when Olivia asked me if there are any “nursing” summer camps out there that she could sign up for this summer!!! (Nursing summer camps? Yikes! I have no idea) Gee, I wonder what’s shaping that interest?

And sometimes it can come directly through an English writing assignment that ends up getting published in the school newspaper as Max’s did last week:

Here, let me zoom in a bit…it’s worth a read:

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I so love that Max chose to write this article…I don’t think I’ve ever had the opportunity to hear his take on Rudy like this and a couple of things surprised me but mostly I love his “shout out” to Rudy’s doctors and nurses (timely, with this being “Nurse Appreciation Week”!) and his assessment that, in the end, the extra work involved in caring for Rudy is all worth it! Who knows, maybe we have a future blogger or two or three in our midst?! Ha 🙂 I hung Max’s article on the wall next to Rudy’s crib…a helpful reminder that the big kids are thinking and feeling and processing more than I give them credit for and prayer for their “heart health” is just as important as for Rudy’s :).

…a little poolside bonding going on among the big sibs. (I couldn’t resist capturing this moment of sibling bliss after a morning of bickering and spats…:)) I pray they grow to rely on and support one another more and more as they mature and continue to navigate life together ’cause there’s nothing sweeter than a sib with whom you’d also choose to be friends. 🙂

Last weekend we did a much-needed cleaning of the garage. In the past, Rudy would scoot down the hallway and would be content to sit on the stoop to take in the action. But this time he wanted to be part of things so he got himself down the stoop and had fun scooting underfoot. Somewhere while we were busy moving stuff around, he spotted the great wide open, tore free from his O2 tube and made a break for it!

I’m outta here!!!

All the way down to the curb across all that brick and concrete; shredding his diaper and oblivious to the abrasions he was inflicting on his legs and bum with each scootch–yelling “bye-bye” louder and louder as the mailbox came in view.

How far we’ve come.

This is a milestone week for us as May 7th is the day Rudy came home from the hospital. (astute Rudy fans might recall the first release being in April, but since we had to return shortly thereafter for a second stint we celebrate the day he came home for good.) Looking at Greg’s discharge day slide show never gets old, especially when we see how different the bouncy 3 1/2yr old is from the fragile little guy who came home after seven months in the ICU.

Today also marks the start of Nurses’ Week. It’s hard to put into words what we feel about nurses–they have become such a part of our life–from the ones who took care of Rudy for continuous 12 hour shifts; to the ones who pull shifts at our house; to the ones who pull together all those details and approvals; to the dear friends who have no formal responsibility but are always available for a quick consult when something doesn’t look right. We love nurses–if you want to see some of the finest, scroll down to the second video below Greg’s discharge slide show.